RxISK has had twenty-two stories and features on sex and drugs over the last two years – more than on any other topic. While we have a Sex Zone on the RxISK front page because we thought the topic might be of some interest, we didn’t expect sex to take over quite like this.
There are a few reasons sex may be so hot.
First a great deal of what is involved is mysterious. Many drugs significantly compromise sexual functioning – but little of this is in the books.
In a world where we can isolate invisible genes that code for all kinds of disorders, and whistle up vaccines to tackle the latest microscopic plague, we seem to know little or nothing about very obvious parts of the human body that we spend a great deal of time staring at and thinking about.
For instance if someone places two pointed objects on the skin of your back an inch or more apart and ask you how many things are touching you, you will say one. Our backs are close to blind to touch it seems. But yet our backs are one of those places where sensuous touch works best – where a gentle almost imperceptible touch can get every hair to stand on end. This electric reaction seems to depend on a special kind of nerve fibre, C fibres, but a particular subdivision of C fibres we have known nothing about until recently and still know very little about.
This is extraordinary because nerves were discovered three hundred years ago and most of the mapping of nerves to the brain was done over a hundred years ago. I thought we knew most of what there is to know about all this but it turns out we don’t know the things that count.
As an expert on the serotonin system, I thought I knew most of what there was to know about this too, but on RxISK a woman who has no university training, and no background in biology, Anne Marie Kelly, taught me things about the serotonin system that no one knew – by just insisting that what she could see happening to herself was in fact happening – that SSRIs made her crave alcohol and drink compulsively – See Driven to Drink.
The mystery of sex and serotonin
It’s been the same with sex. There have been many people with Post-SSRI Sexual Dysfunction (PSSD) who have outlined on RxISK aspects of sexual functioning and the effect of drugs on sexual functioning we just didn’t know about. It’s pharmacologically baffling for instance why side effects like PSSD often appear after the drug has been stopped.
In the process of doing their own research, many of those who have been in touch with RxISK have made it clear that a key problem they run into is doctors who refuse to listen, who dismiss as impossible things that are clearly happening. Doctors who don’t even help in the way they could by simply showing a basic curiosity. For whom research is something that happens elsewhere. In the face of so much desperate suffering, this shouldn’t be the case.
You can see the process of ordinary people getting to grips with strange clinical phenomena that the experts know little about in this account of Persistent Genital Arousal Disorder (PGAD). PGAD is the mirror image of PSSD. It too can be triggered by SSRIs. What you see in this link is a group of women making exactly the kind of observations that are needed to help work out what might be going on here.
Mysteries of the skin
In the middle of the observations these women make on PGAD, you will spot one woman mention vulvodynia. This means a burning sensation or pain on touch in the vulval area.
Many medications such as benzodiazepines for anxiety, triptans for migraine, anticonvulsants, mood stabilizers and fluoroquinolone antibiotics can give painful skin sensations in different parts of the body. The technical term is Tactile Allodynia. This is almost the exact opposite of the genital numbing found with SSRIs. The numbing and the pain probably have a common root. These “weird” effects are often dismissed as psychosomatic. Or they are dismissed because the doctor you consult hasn’t heard of anything like this before.
We need to map all the treatment linked skin conditions – what drugs are linked with what painful, numb or other strange sensations and where on the body these are most likely to occur. You might have thought we are now putting billions of dollars into genetic research because we already have obvious things like this sorted out – think again.
If we are going to find a treatment for conditions like PSSD, and Tactile Allodynia, it will be most likely to come from the observations of people with no background in healthcare who don’t go by the book and who are able to stand by the evidence of their own eyes or fingers.
The standard approach that people affected with PSSD have taken to solving the problem has been to think in terms of neurotransmitters. This is probably the wrong way to think but it can be useful it if gets people to try things out. Trying things out is the key thing.
On RxISK we have researched a number of left field options – unfortunately these haven’t worked either.
But here are some more.
Benztropine (Cogentin) is usually thought of as an anticholinergic drug. But there is some evidence that low dose benztropine may have nerve healing properties – see Come in Benztropine. Based on this four men have tried it.
- One had a temporary response in the few days after he stopped a short course.
- The second had little or no response to a short course.
- The third had no relief in three months of taking but felt better in himself – interacting with others more and laughing more. On stopping it, he was close to back to normal sexually for a ten day period before the benefit waned.
- The fourth has recovered most of his sexual functioning with even his testosterone levels coming back to normal – on treatment. He also feels good. But he did not have marked genital anesthesia to begin with. We have to wait and see if this response will be enduring.
The feel good effect may be more anti-cholinergic than nerve healing. Anticholinergic drugs in the right dose are euphoriants.
Selegilene – Deprenyl
One of the most mysterious drugs in medicine is selegilene which was traded under names like Deprenyl or Eldepryl. This was discovered by Jozsef Knoll in Budapest in the 1960s. The original discovery and Knoll’s later work on the drug was worthy of a Nobel Prize. The full story is here – JKnoll.
Selegilene it turns out is a good antidepressant – an MAOI – monoamine oxidase inhibitor. It also became the first line treatment for Parkinson’s disease. All this happened while Knoll was discovering that underneath its headline anti-Parkinson’s and antidepressant actions, just like underneath benztropine’s anticholinergic effect, there was another more important action that took place at a fraction of the usual clinical dose. At low doses this drug releases neurotransmitters. In animal studies this effect appears anti-aging and seems to rebalance neurotransmitter systems.
Knoll’s insights were the basis for a huge upsurge in interest in the idea of smart drugs or cognitive enhancers, and the search for anti-aging treatments. He has had an extraordinary but unrecognized effect on many areas.
If there is anything to Selegilene for PSSD, the ideal dose to take would be 1 mg per day. The only way to do this easily is with Selegilene liquid but this has gone off the market in some countries (like Britain – although it likely could be ordered). The other approach is to get Eldepryl 5 mg tablets and quarter these.
With a treatment like this, while Selegilene has many immediate stimulant effects, there will likely be no immediate change in PSSD. So the judgement call will be how long to continue with treatment to see if it rebalances systems. Several weeks, even months might be worth looking at – some people take this dose for years for cognitive enhancing or anti-aging purposes. (But bear in mind, the human body is not designed to withstand chronic poisoning with anything from Aspirin to Antidepressants).
A political mystery
One reason why there have been so many posts on Sex has been down to John Tucker. Tucker is a Wikipedia editor, who goes by the name Formerly 98. He has previously worked for the pharmaceutical industry – this is not a crime but is disingenuous in the light of what happened.
He took down the Wikipedia page on PSSD. Tucker and the Wikipedia structure then sabotaged our efforts to reinstate the PSSD page. Wikipedia also took down posts on sexual dysfunction following Finasteride. The controversies this Wiki-Censorship gave rise to generated a series of posts that can be seen in the Sex Zone links.
The German, Chinese and other Wiki sites on PSSD haven’t been affected in this way. What’s going on?
John Tucker made a big deal about the fact that the SSRIs are all off patent and there was therefore no conflict of interest involved in his dispassionate scientific analysis of why the PSSD Page wasn’t justified.
But there are skeletons in the industry cupboard. In the 1990s NIH studies on fluoxetine showed in juvenile animals that fluoxetine wiped out testes and sperm production and shrank ovaries. If SSRIs can do this in juvenile animals, they can do it when given in utero and in children.
In the 1990s across Europe the newly introduced SSRIs came with warnings. Do not give in pregnancy. Women of child-bearing years must be using adequate contraception. By 2000 most of these warnings had evaporated. As the European Medicines Agency came into being, there was a requirement for companies to “harmonize their labels”. In the face of data that all companies had showing that SSRIs could have profound effects not just on sexual functioning but on the sexual body, opted to harmonize sex out of drug labels.
No conflict of interest?
Well if no one makes a link between their drug intake as a child or teenager, or a mother’s drug intake, until they are three years past the age of twenty-one, the companies will have got away with this gamble. If a link is made, the gamble will have backfired.
A cosmic mystery
Who could roll the Dice?
Anyone with a Birth Defect, Autistic Spectrum Disorder, Mental Handicap, Developmental Delay, or Asexuality following antidepressant use in pregnancy or PSSD, PGAD, Asexuality or other conditions following SSRI intake during childhood.
Suffer the Little Children.
Illustration: Adam and Eve on Prozac (No fig leaf required), © 2014 created by Billiam James